Yesterday, for the first time since I started working with a personal trainer twice a week a few months ago, I lost my balance and fell during a workout. It’s actually pretty impressive that it took this long for the inevitable to occur. I say inevitable not because of my tendency towards self deprecating humor, but because the reality is I have what some might call a “subtle” (but diagnosed) disability. My brain has a hard time understanding where my body is in space.
It is because of this disconnection between my brain and my body that I was in special ed in high school. I was also in AP classes. I used to joke, “I’m not stupid, just retarded.” But the thing about subtle or hidden disabilities — those that allow people to “pass” or whose causes cannot be observed — is that it can be difficult for everyone, including the person with the disability, to feel there is a difference. When I fell yesterday, I landed awkwardly and my right foot is still recovering. After the session ended, I walked slowly into the bathroom, turned on the shower, sat on the floor, and cried.
I was a little nervous about my foot and I was a little embarrassed about falling, but these things were passing. What does not pass, and what cannot be seen, is the uncertainty and the fear. There is a thing that is wrong with me, there is a thing that is wrong in me, that isn’t limited to one area or one subject. I can’t experience life except from within my body. It affects every minute of my lived experience, and not always in predictable ways. I am going to try to talk a little bit about what it’s like to inhabit this space.
A conflict that centers around someone else perceiving my behavior as unethical or unfriendly or inconsiderate, which is truly to do with my disability, is not always, and in fact not usually, an example of ableism. In reality, it is usually, and perhaps obviously, the same exact problem on both sides: both of us feel as though we are not being considered as people. It’s actually okay for someone else to feel bad, wronged or alienated by my disability. That’s a totally valid emotion— fuck, I feel bad, wronged, and alienated by it. The problem here is not that one person is discriminating against another person with a disability. More often than not, the problem is that both people need to be explicit about how the other person is making him or her feel, so as to work out an agreement that will make everyone feel better, and also because hearing the honest words, “I don’t want you to feel that way, and I would never do that to you on purpose,” really does help.
It can therefore be very frustrating to see people with or without humor, in comic or essay form, on forums or in person, on a soap box about ableism. You can always make the case than any conflict with me is ableist, but that takes away the agency of both me and the person I am disagreeing with, which doesn’t feel good at all. I imagine this is not necessarily the case for disabilities that are more inhibiting than mine, or that are not hidden, but it is true for me.
The things I can’t do don’t bother me very much — I will never drive, I will never be very good at anything to do with Chicago in the winter, climbing ladders, getting on and off the bus, getting on escalators, standing on chairs, anything steep, treadmills, anything athletic, lots of things including fine motor control (first person shooters! I would love to shoot things with a video game controller, but ten-to-one I’ll die before I get the chance), dancing (ughhh), fighting (who doesn’t want to be Buffy?) and many other situations that require a certain amount of balance. My visual spatial processing is also terrible- I can’t see directions in my mind, I have trouble with graphs and infographics, I took me a few months to really learn and remember where which dishes were supposed to go in the kitchen. Most recently, an amazing photographer and friend of mine did a shoot with me, and it took me longer than usual to follow directions for poses. These things don’t bother me because I expect them, and I have no real control over them. They’re bothersome like the rain when I forget a rain jacket. It is what it is.
But the experience of this disability is not in merely what I cannot do. It is in the uncertainty of all the things I will ever try to do, it is in the knowledge that there are some things I will discover I cannot do because part of me is unfixable. That’s what it feels like, and there is a difference between being afraid of failure and being afraid of failure due to being broken. I have experienced the first, I live with the second.
There is an intentional obtuseness on the part of the people who are very close to me that is derived from their pain in witnessing my pain, and from the belief that not acknowledging my disability will make me more capable. You see this argument on the internet a lot: tell your child he or she is beautiful or smart often because if your children believe they are beautiful and smart, they will demand the world believe it too. I don’t know if that works on beauty and smarts. It does not work on subtle disabilities.
Lastly, there are two different kinds of loneliness associated with this disability. The first is the obvious one - the alienation arising from not being able to do common activities- to feel, therefore, “uncommon.” The second is related but not exactly the same. To be uncommon is not necessarily to be alone, it is to be in a minority. But my disability which does not show, which allows me to “pass” as merely incompetent, it does me the disservice of not only making me feel “uncommon,” but to make me appear “common.” I would never go so far as to say those disabilities which cannot be hidden are better — they most certainly are not — but it is harder to find and connect with people who share hidden disabilities, and that is a second loneliness: the loneliness of being uncommon alone.
This has largely focused on what it’s like to have this disability, so it may seem like that is always the lens through which I view the world. In fact, it usually isn’t, which is why I’m writing this post, because I barely ever talk about it. On the whole, I am pretty happy with my ability to navigate who I am and what I’m doing (not necessarily my actual navigation thereof, but I am satisfied with the general means I have at my disposal). The flash and bang of my personality isn’t an act: I do think I am pretty awesome. But there is an unusual space I inhabit, a space that does not fit very well with the rest of my identity, and therefore one I don’t talk about very much. This post is an attempt to rectify that.
This is the idea: If you were a library, what would your classification system look like? How would things be cataloged? Where would you place the different collections?
Putting the “social” back into “social media,” this website, called BeMyLibrarian, would aggregate the issues that were important to you, and catalog them under user defined classifications. Other users could browse your catalog, simultaneously consuming information, learning about you, and looking at a unique piece of art. Some media might go under the classification “home,” or “belonging,” or “alienating,” or “disappointing,” or “scary.” For the user himself, he may learn about himself as he catalogs. And you could lend media from any of your collections to anyone else, the act having more meaning because of it’s position within your self-as-library.
This is just a thought experiment, I don’t think I’d actually make this website, but the personal classification system seems like a good way to understand oneself in this world.
It started when I found the following image:
Which made me think: what is happening around me?
Which leads me back to my very favorite binary: My idea of what is happening and what is actually happening, which binary I love not because of that old argument about shaping reality, but because of all the types of loneliness I have encountered so far, by far the most compelling one has to do with this binary directly. If you’re a romantic (I’m a romantic), you’re more likely to be really into the idea of something and less likely to be into the things themselves. The romance of coffee, for example, is what Mr. Starbucks (Howard Schultz) claims makes Starbucks so much money — not the coffee itself. But the experience of something is necessarily imperfect compared to the idea of the experience of it, and when you feel that contradiction, it’s lonely. Especially, if, say, you really like the idea of people in all their complexity, but then you encounter that complexity in lived experience …. it can feel very alienating.
But because I was also having a discussion today about my subscription to GQ (and not being a target audience member), I got to thinking about another idea/reality contradiction(?): The Manic Pixie Dream Girl. The MPDG. And there’s some interesting stuff out there, written recently, about whether the romance of the MPDG is oppressive to the lived experiences of women, or (?!) whether it’s oppressive to men! (yeah, weird)
Laurie Pennie at The New Statesmen writes a piece that argues it is oppressive to women, titled 'I Was a Manic Pixie Dream Girl.'
Hugo Schwyzer responds with an article in The Atlantic, titled 'The Real-World Consequences of The Manic Pixie Dream Girl.'
This is my take: the female gender is conditioned to generally be more romantic. Just one example — we’re taught to like diamonds because of what they indicate about a romantic relationship, and men are taught to respect diamonds because of how much they cost. Women are subtle, their insults are subtle (and psychological), men are blatant, their insults are fists. Etc. etc. I’m not arguing these things are universally true, or even mostly true, but they’re cliches for a reason, and that reason is nurture based — the difference between the way we raise men and women in the U.S.
The idea of a thing is more feminine, ideas are more feminine, the physical stuff is all considered more masculine. No, I’m not even going to talk about sex, but you know what I mean. I think these two articles represent the same binary: the idea of a thing and the “real world consequences” or the lived experience of a thing. And I don’t think it’s an accident that the first was written by a woman, and the second by a man.
So, this year was ridiculously weird and difficult for me, emotionally, for what appeared to me to be no good reason. The truth of the matter is, while I have done things here and there this last year that are worth repenting for, I also did more things I have been proud of than ever before, and many less bad things than the year before. So by all accounts, I should not have been too distraught.
In reviewing my own responses, I think the opposite might be true of this year: it may be that I am upset for not sticking up for myself and the legitimacy of who I am enough this year. It may be that I didn’t surround myself with the right people, the people worth sinning around. These things I don’t really consider to be sins, I don’t think God expects me to repent for not loving myself as much as I should (because it is pretty much as self centered as it sounds…not all self centered-ness is bad but i don’t think any of it is a mitzvah, and because we only have so much agency over our ideas about ourselves). What may be a sin, though, is taking the easy road when the difficult road would have been better for me and for the world. Not giving the world what I could to make it better by not giving myself what I needed to be capable of doing that work? That there might be a sin.
When I walked into Kol Nidre, I was really, deeply pissed off. My sister asked me if I was okay three or four time and I pretty much burst into tears after the first thirty minutes. I know from experience that when I am upset at either nobody (but still upset) or everybody, I am really upset at myself. Not for being quiet when I should have been loud, because I am pretty sure I can bring the loudness like the Chicago CTA brings the loudness: inevitably once every 7-15 minutes or so. Rather, my work ethic, specifically in terms of mitzvot, and in compassion, lacked this year. My weaknesses were consistent and my strengths inconsistent. I reacted out of fear, intimidation and embarrassment too much, I avoided conflict too much, mostly because I was not convinced, and am still not convinced, that I am a good person, or a smart person, or a capable person.
The day of Yom Kippur continued in this same vein, for me, of deeply upsetting moments. You know that story about how thousands of years ago when we did animal sacrifice, we slaughtered one goat and drove the other off the cliff? I swear to God, I spent the next hour practically in TEARS on behalf of the goat that got driven off the cliff who may or may not have even been a real goat and even if it was, has definitely been dead for millenia. Which for some people is perfectly natural — to get that upset — but I am rarely that sentimental when I’m not drunk. Ultimately, the goat represents to my poor self-questioning soul the part of us that feels oppressed for things entirely beyond our control — perhaps totally outside of our perception even. Imagining that goat not understanding for the life of it why it was being driven off the cliff when it was perfectly content to just be by itself and not bother anyone makes me want to cry RIGHT NOW. It’s TERRIBLE AND EVIL AND NO CREATURE SHOULD EVER FEEL LIKE THAT.
One one level, that goat is me (per the drash), but not my sins — I am feeling protective of a part of myself that feels symbolically as the goat felt, that it is hated for reasons entirely outside of its control, and sometimes even its perception. On another, I am so angry at myself for not standing between all of the people in “my community” and the goats. I know that my intuition is strong, that my moral compass is true, I know that I am articulate and smart and kind and compassionate enough to be a powerful voice in defense of the goat, in whatever form that goat might take.
But I don’t always believe it. I hate talking about my feelings. That’s a huge cliche, but I really do. As a result, I tend to surround myself with people who are very caring but not necessarily the most considerate of other people’s feelings — because, naturally, people talk about the things they consider. And, I suppose, the extreme opposite, people who are so considerate of my desire to not talk about my feelings that they do the best they can without asking me. My sister is certainly often that way. This is not really their fault, nor would they turn away if I brought up my feelings — this isn’t really about them except insofar as how I choose to interact with them can sometimes reinforce my own insecurities.
The day AFTER Yom Kippur, I went through my childhood bedroom — which was literally mine from the day I came home from the hospital until the day I moved out of my parents’ house — and packed up the stuff I wanted or needed to keep, so that my parents could get ready to sell the house. I came across the old journals of mine from years 16-19 of my life, or so. Outside of the normal, horrendously embarrassing things a 27 year old is likely to find inside her teenage journals, something else struck me which is that in the eleven years since the beginning of those journals, my insecurities have not changed. I am not insecure about new things, I am insecure about exactly the same things I was insecure about when I was sixteen years old. To be honest, I am not so insecure, certainly not relative to other people I know. I am not walking around feeling insignificant or incomparable to other people. That’s because (as I documented in those very journals) I don’t really care what other people think about me, unless it’s also what I think about me.
A year in which there was no great misdeed to repent for was a year in which I became aware of my misdeeds through inaction, through fear of confronting myself. I’m not stupid enough to make any promises about what I will do this year, but I pray for the strength to treat myself the way I want to be treated, and to stand between the goat and the men with sticks as often as I can.
I just went to a conference on online education, and I learned that while we have lots of ideas about what to give badges for, and what they might look like, we don’t really have a good grasp of what the worth of a badge is. What does it mean to have a badge? What can you do with it?
I think there is one obvious, serious, amazing use for badges. There may be many uses, but there is one that I thought of that I just love and want you to think about and spread as a possible idea, especially to service oriented non-for-profit and public orgs, and that is this:
Badges for civic service.
I suggest, in fact, a leveled badging system, where you need to earn various badges to access new opportunities and new badges. Opportunities could include service projects that involve travel or new responsibilities or the ability to organize your own project, or many, many other things. I think this system should be sponsored by the government and endorsed by institutions nationally, regardless of affiliation (religious, public, for profit, non for profit) as a way of recognizing service to one’s community. These badges should be available on LinkedIn, for personal websites, on resumes, etc — because it should be a sign of a good employee that he is invested in the well being of his communities. This systems should incorporate a social aspect — with local, in-person badging ceremonies, meetups at independent restaurants, theaters and other community-friendly locations, online community, and more. Badges should be tickets into continuing ed courses on community building, ethical eating, environment friendly behavior, and other things which lead to a better world for everyone. Badges should show expertise- this person has taught or mentored others, this person has web design experience, this person has had to do something unexpected and brave and rose to the occasion.
Because we should embody the change we want to see in our communities, because we should be role models for the next generation, because, ultimately, we wall want to do the world’s work. Badges for civic service. Let’s do this.
Jessica Williams proposes applying New York’s Stop and Frisk policy to Wall Street bankers.
- Who? You. Librarian & non-librarian tumblr friends alike.
- What if I’m not a librarian? What did I just say?
- When? Sunday, July 28, 2pm
- Where? Happy Village, 1059 N. Wolcott (at Wolcott & Thomas)
- What? Day drink and discuss.
- Dig it.
See you Sunday? I’ll be the chick covered in sand and sweat and sunblock from my volleyball tournament. I’ll try to snag a couple of tables, but if you beat me there, please do the honors. I’ll also have the Bookcycle if you want to bring a book or two!
In the event Happy Village is swarmed with Uki Village’s hippest Hamm’s sippers, we can reroute to InnerTown or Cleo’s on Chicago or shoot we can just have a bar crawl ourselves. Dives abound.
Oh and ps we’re definitely gonna have to video some Malort faces…
oh oh oh!
“And on the subject of burning books: I want to congratulate librarians, not famous for their physical strength or their powerful political connections or their great wealth, who, all over this country, have staunchly resisted anti-democratic bullies who have tried to remove certain books from their shelves, and have refused to reveal to thought police the names of persons who have checked out those titles.
So the America I loved still exists, if not in the White House or the Supreme Court or the Senate or the House of Representatives or the media. The America I love still exists at the front desks of our public libraries.”
― Kurt Vonnegut, A Man Without a Country
1) It may not be at the direct request of an organization such as the WikiLeaks most wanted list.
2) It shall not be continuous: an ethical whistleblower reveals a specific scandal and does not simply do a massive data dump.
3) It can be anonymous or not, whichever the whistleblower deems more likely to help the story get attention.
4) It shall occur when a law is broken AND/OR when the whisteblower feels that something deeply unethical is happening. It shall not occur due to popular demand, or simply because the whistleblower has access to the information.
In short, the ethical whistleblower shows responsibility, good judgment, sound reasoning and admirable motivation.